GRRRRRRRRR I HATE LE..........
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Susan......I really hate taking the time to do MLD....it is a good thing that you shared your information....I most certainly will continue to do it....Liz
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I have not been doing mine, but it was a kind of meditation for me. I'd tilt my head down, then tilt it right, then tilt it left, then lean forward and kiss my Dusty. He enjoyed lots of repetitions of that move.
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Susan, what kind of pump are you using? Does it not have a torso-clearing section to the routine? That's just so discouraging, and I'm really sorry it's back to Square One (though I am glad there's a Square One to go back to!) Let us know how it goes.
Be well,
Binney0 -
I have a Flexitouch with arm chest and torso. I'm not sure what the problem is but wondering if it's because I'm tall. The two piece's active chambers have a gap at the waist of more than 8 inches. Also could be the light very loose sleeping bra I starting wearing while using the pump. The pump was not affecting the lower, under portion of my breast so it was recommended that I wear something to keep from overlapping. I may also have some ineffective chambers, I was paying attention today and felt nothing happen on my ribs where half my breast ends up when I lay down even with the sleeping bra. I'm sure the LEPT with have a few thoughts.Since October I have believed I had a handle on LE and found out I didn't at least 10 times. Not there yet.
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Lymphedema is "whack a mole," for sure. Do let us know what you therapist has to say. You might also want to have the Flexi trainer or rep come out and assess the situation on the pump operation. GRRRRRRRRRRR!
Hugs,
Binney0 -
I just spoke with someone from Flexitouch today. I will hear back tomorrow on what my insurance will cover. I haven't had LE therapy in well over 2 years. I have done MLD but it doesn't seem to do any good. I guess I'm not giving enough pressure to help with it. My LE therapist moved from Texas to NC and my hospital isn't looking into obtaining a new LE therapist. My nearest "in-network" facility is over 70 miles away. I refuse to drive that 3 times a week. I wear a compression sleeve 7 days a week for almost 16 hours a day. I'm really tired of the LE and wish it would just go away for good.
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Chrisrenee: i would suggest that if there is a closer LE therapist,, even if out of network,,, you petition your insurance company to allow you to see that person for the same copay as in network.. There is a "reasonable driving distance" and 70 miles is beyond reasonable. i did this with Blue Cross and it worked. I have to re-petition every year,, but still, beats driving. Find someone that you want to see and then pound on your insurance company to let you see that person. Best of luck!0 -
glennie- my insurance only has in network coverage only. I've appealed it before but they will only cover at network hospitals. And the nearest one is 70 miles away. So the cost of the flexitouch will be cheaper than wear and tear on my car and the cost of gas. I'm constantly on the phone with my insurance company for some stupid reason.
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@Chris, I found this video helpful. https://www.youtube.com/watch?v=pSD7j8mSVkM My LEPT didn't show me how to massage my arm because I was getting the Flexitouch and she didn't think I needed it, but after 2 fittings it still isn't working right and it will be a while before I have time to deal with it again. I follow along with the video. I have to pause it a few times to get in the number of reps required. The young woman explains the amount of pressure you should use and demonstrates it well. I hope you can find a solution.
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SusanSnow - good video. Thanks for posting.
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I had a PT follow up today - after feeling like things had gotten worse and getting a preview of what my summers may be like after that week in Florida.
My bioimpedence has come down to a ONE! It had been 12 and 9 at one point, I understand under 10 is normal (someone correct me on that). My measurements are down too!
Woo Hooo -feeling good, she said to keep doing what I'm doing...which is wearing my sleeve all the time. So far that hasn't been a pain. and with numbers so good, I don't feel so bad about ripping it off once in a while if I can take it anymore.
my exchange is on Monday - I'm a little worried that might cause a flare, but oh well, I can't wait to say good riddance to these darn TEs!
Jen
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Chrisrenee,, sucks about your insurance!!
Jen: YAY for measurements being down! Can you see your PT as soon as possible after your exchange? When I have voiced concerns to mine about surgery,, she says,, we will manage it. Get back in to see me as soon as possible afterwards. So I pass this advice onto you.
I will have to check out that vid when I'm not on work computer. No Youtube allowed on work computer.
Also,, if you all have not tried Go Healthy Steps with Sherry Lebed, I wanted to mention it. She has a DVD, but you can find the vids on Youtube also. You have to find them and do them in order but I and others on here have found them helpful. Here's a link to the DVD. I think you can search for The Lebed Method on Youtube. https://www.gohealthysteps.com/shop/product/focus-on-healing-through-therapeutic-exercise-and-movement-dvd-1014.cfm
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What is an exchange? What is bioimpedence? What is a TE? So much I don't know.0 -
susansnowflake- exchange is when you go from Tissue Expanders (TE's) to implants. The bioimpedence i'm not sure what that is.
Glennie- yes it really does. I did meet with the Flexitouch person today to go over the information on the machine as well as financial responsibility. It does cost a bit more than I wanted to pay but I think it will be better in the long run for me. We are submitting everything through to the insurance company for approval. So now it is all in my insurance companies hand. So now it's a wait and see game.
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susan - go to 'all threads' and there is a section for new members. There is a list of all the abbreviations.
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bio impedence is some sort of measurement that the PT does with electrodes. Not sure WHT it does, I assume it measures lymph flow.
I have an appointment with Chris, my magical massage guy for 10 days after my exchange. PT didn't suggest that I come see her.
I learned today that she is retiring ... gulp ... i don't like the other therapiss. Good thing I like my massage guy. She will be back per diem in January so we'll see. Maybe I won't need her!
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All winter I had worn long sleeves which was great at concealing my sleeve but yesterday morn it was hot out and I thought "hey what the heck, I am wearing a tee, I am not covering up this ugly sleeve just to boil over".
So I get to work and our new employee of a week sees me without long sleeves and in a tee for the first time and says"do you have to wear that thing everyday"? I didn't even a good morning greeting. I just said "yes" ever so flatly. After 5 minutes I turned to her and looked at her scarred up foot which she had talked about last week and said.:do you have to go for surgery on that foot" and she said "yes' flatly. We then both turned to our own work projects with no other words.
It was all so strange and I just had to tell someone about being slapped with this first thing in the morn. As you all know I hate my LE gear. Just grrrring here.Thanks for listening ears. I know you totally get it!
I really am a friendly sort but it really gets my back up when my arm becomes a conversation piece.
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we hear that, hugz! And how rude of co-worker,,, not even a Hello,,, just jump right on your arm? GRRRRRRR.0 -
I had a new director that was eating lunch with my supervisor and I and my supervisor and I were talking about my LE. My supervisor looked over at the director and said "that's why she has to wear the sleeve". The director said (while rolling her eyes at me) " I just figured she had a full arm tattoo, that's why she's wearing it". I was so pissed that she just assumed I had a full arm tattoo and judged me for it. My supervisor had to give me the look of don't worry about it, she won't last long here. 10 months later I ran her off, by telling her that she can't deny me FMLA leave because I was going out for more reconstructive surgery even though she considered it "cosmetic".I do get lots of comments about my sleeve at work. I work at a hospital and have direct contact with patients. My favorite one, a male patient kept asking me about my sleeve the one I was wearing at the time was all black. Me being in a bad mood, I was giving vague answers, I have swelling due to a surgery I had. I finally told him, that I had an accident and lost my arm and when I saw the surgeon I told him I didn't care what the arm looked like just get me a new one. when I woke up from surgery this was what I had. Lifted my arm and showed him how well it worked. The stupid man fell for it with all the "aww that's cool, you have a great story to tell your kids".
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This Week I got slammed a few times for wearing my Sleeve.....The first was at MY Doctors office......A new Girl Called my Name to come in and When I got up in the Waiting room with a LOUD voice she said WHAT happened to your Arm!! Then later in the week after explaining last Summer to a few people what this was....I saw one of the girls and she said in a LOUD voice WHAT happened to your arm!! Now she is a School Principal......Brings me Back to you just cannot educate STUPID people....Liz
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Sandcastle - makes we want to get a sleeve that is printed with the international radiation symbols. Maybe that would keep them away.
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I was registering voters with my son then 4 years old. I was helping a man that was in a wheel chair when my son said "what's wrong with your legs". I was embarrassed but the man simply explained to my son how he was injured during the Viet Nam war and his legs had become skinny because they don't work anymore. Needless to say I was grateful that he hadn't become angry, but also grateful for his kindness.
I'm not trying to discount your irritation with the questions and I know this is a place to vent, but wouldn't it be easier to say I have Lymphedema? (except to the stupid principal, to whom I would have told "Don't you remember I told you about being kidnapped by pirates and walking the plank and being bitten by a shark, I can't believe you don't remember me telling you that)
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Susan.....Of Course.....I have tried to Educate people.....It does seem the thing to do.....BUT....it just does not work....I had a Similar instance as you with your son.....Mine was with my Grandson....at our Community pool....at that time he was about 6 years old....and Wayne who was in a wheel chair and a amputee....was asked by my Grandson...."Did YOU walk here? OMG.....yes Wayne was good........But I did explain to my Grand not to ask questions like this.......Liz
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I normally tell people that I have swelling due to a surgery I had. But then they want to know what type of surgery. When I'm at work I don't feel I am required to tell a patient about my sleeve or surgery. When I come across a patient that has been diagnosed with BC we will talk about it in depth. My MX patients we generally talk about SE's of the surgery, what to expect after surgery the TE's and exchange process. I've gotten really good at ignoring some of the questions that come to me about my sleeve.
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Chrisrenee......I think I have to get like my daughter's Mother-in-law......If she feels she is being asked a personal question....she just stares at the person and says....THAT is personal...........My PT says NO ONE has a right to ask or comment on your health Issues.......now I do know our loved one's we do not want to alienate..........but for me this is a daily.....the strangest thing is at the gym....NO one has asked me.....maybe because they are just plain involved in their own moment at the time.....Liz
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We all should remember to make these boards a safe place for ALL of us to come too and I do mean that for myself also.....Liz0 -
I was at a church service recently, long time pal comes up to me in the middle of the church with lots of folks around and says..."why are you limping?". well my back hurts and this is the way I walk!
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That has happened to me....from way across the room....being asked about my arm........you try and give a simple kind answer but they go on and on.....Liz
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I think I have lymphadema I had surgery in January and have been drained twice since then, the cells from the drainage say they are normal lymph cells, which the dr assures me is good, but why swelling, and fluid still under arms and near scar? Am I worried for nothing, or should I seek another opinion?
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jerseygirl- my first suspicion that I had LE was that my wedding ring was very tight and that when I took it off at night I had intentions from ring on my finger. The next was that my watch that is normally loose was getting a bit tighter. My LE therapist says that is where people see their signs at. I would suggest having your MO write an order for you to go see someone who specializes in LE and have them do some measurements on you. Also monitor your hand and wrist to see if you have any signs of swelling.
Christy
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